Benlysta? Advice

ehorne777ehorne777 Member New Member
Hey Everybody,
I'm a 20 year old girl who 6 months ago found out that I had SLE lupus. I had a very bad flare near the beginning of summer. It was mostly a terrible rash on my face and feeling awful with fevers and such. I'm still dealing with that same flare. It seems to keep coming back in one way or another. My face is almost completely clear, but I now have rashes on my knees and elbows and for the past month have been losing my hair. I have pretty big bald spot on the back of my head. The dr took a biopsy on my elbow and came back with that I had PNGD (palisaded neutrophilic and granulomatous dermatitis). The dr basically said there's nothing they can do about the PNGD. They want to start me on Quinacrine, but the problem is they don't make it anymore in normal pharmacies. We have been waiting for three weeks for this medicine while I have just been sitting being sick. I'm on 400 plaquenil a day (should be on 300 for my weight) and am on almost a full dose of methotrexate. I'm also on 20 mg a day prednisone and whenever we lower me I flare again.
We recently went to a new rheumatologist to get a second opinion on medicine. He thought Benlysta was the way to go. Does anyone have any advice? Has anyone out there tried it?
My dad's been looking into giving Benlysta as a shot at home, but we can't find a lot of information on it. I'm also worried about the cost. We can't find prices anywhere, but it seems really expensive. I've read that I could get sick on the Benlysta or get sick around the time I have to take it every month and I don't want that. (I already feel awful every weekend I take the methotrexate).
So right now, I'm thinking my options are
1. Try Benlysta
2. Wait
Honestly I think I would wait right now except for the fact that I'm losing so much hair. I'm a 20 year old girl so my hair is important to me. The other problem is that I am a college student and from what I have read online the first month on Benlysta is hard. I can't just take a month off for my body to adjust.
Anyways, any help or advice is massively appreciated.


  • tcooperxtcooperx Member New Member
    I am also a 20 year old college student who is about to start Benlysta on Monday. I am so desperate to feel better at this point I’m willing to try it. I really trust my rheumatologist and he thinks I will respond well to it. I’m also on hydroxychloroquine that has helped my joint pain some. If you don’t respond well to it, you can always stop but for me I’m willing to at least try it. 
  • hicks0407hicks0407 Member New Member
    I am 45 and I started my first injection today. I also take hydroxychloroquine, Leflunomide, Cymbalta and now Benlysta. Hopefully this will help. The Rheumatologist said it could take 3 or 4 months to see any change. If this doesn’t workI am going to try the infusions. Fingers crossed.
  • Findingmedaily22Findingmedaily22 Member New Member
    I am 49 and Benlysta was highly suggested as hydroxychloroquine and other meds are not keeping the flares at bay.  I’m a bit nervous and was hoping for other experiences, but seems we are all in this together.  Best of luck and health to all.  If there are others out there or other medical reviews to put up here that would be awesome. If not. We can keep each other posted.  Thanks.  I start in a couple of weeks.
  • 2Leosons2Leosons Member New Member
    I’m 55 and have been on Benlysta injectable for 8 months. For me, it’s been fantastic-removing near 75% of my joint inflammation. The first month or so I felt a little crappy for 24 hours, but nothing major. I’m also on hydroxychloroquine 400 mg a day. Hope this helps. 😊
  • vljones48vljones48 Member New Member
    I have Lupus and RA and Sjorgren's Syndrome.  I went through the various medications and they did not help.  My Dr. started me on Benlysta in 2013 ( I believe it only became available in 2012) and I have been using it once a month since that time.  No major side effects.  Migraines were a potential and it concerned me as I have had them in the past.  But the only thing I get is a slight headache about 1 1/2 -2 hours after infusion.  Very mild and goes away in a couple of hours.  It is not a perfect "fix" but better than anything else I have tried.  I also am on cellcept daily.  That dosage varies depending on flares. 
  • cyndyvcyndyv Member New Member
    I am 62 & have had Lupus for 37 years. Have been on quite a few different meds, including prednisone (which I HATE). For ehorne777, to get Quinacrine you have to go to a compounding pharmacy. It costs a little more but it's  worth it.  I have SLE & DLE. My DLE was horrendous. I traveled from Central Texas to Oklahoma City to see a reknowed dermatologist who specializes in lupus. He prescribed Quinacrine. It cleared up my DLE within months. I have been on Benlysta for over 7 years for SLE & DLE & love it! Hope this helps
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